I am new to all this! It’s been a whirlwind of a week for me this week and I can’t help feel it’s the worse possible timing due to COVID-19.
Last week I went for a endoscopy due to having abdominal pains and bloating for nearly a year now, believing it was a food intolerance of some sort, but what they found was much worse, grade 4 oesophageal varices. From there I had an appointment with the gastro consultant to the next day where they started me on beta blockers, and I was called the following day for a Fibro scan which within a matter of what felt like seconds the could see I had liver cirrhosis.
I’ve had a liver biopsy and am waiting the results which I am hoping to get tomorrow.
The hospital have been so fast in trying to find the cause. I am not presenting with any typical symptoms and my LFT have only been slightly out. If I had not asked for the camera I would have never known.
I feel like I am on emotional rollercoaster at the moment, I’m 33 years old, regular gym goer love my HITT classes, run regular and weight training . I have been told I cannot exercise due to the pressure it could put on the varices and the risk of them bursting. I’ve taken their advise and stopped. I eat well and am a healthy weight.
I have 2 children and a husband and genuinely feel at the moment like everyday could be my last. And with all this COVID 19 I am unable to see those I love due to isolating.
I have 101 things are going through my mind while I try to remain strong for my husband and children, feeling that I won’t see their milestone birthday and worrying that they will be without a mum. I am trying to stay positive but I fear the worse.
I want to live like everyday is my last but I don’t know where to start and with COVID-19 it’s proving difficult.
I guess it will all become clear for me when they find the cause and I can start some treatment.
I take my hat off to all of you going through the same or similar or have loved ones going through the same.
Xx
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FAM_KT
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Hi lovely. You will have so much support from this wonderful forum. I do live everyday, finding fun in simple things, laughing with those I love (albeit remotely) and this is a great time to reconnect with our childhood, playing board games and just chatting.
Of course I empathise, I was where you are more than 2 years ago and currently on the transplant list.
I knew I had problems and was advised to stop drinking which I ignored (why!!) but was unaware that I had enlarged varices until they burst. I was rushed into hospital and luckily saved by the NHS but it was touch and go. I am not trying to frighten you but you MUST stop drinking,avoid salt and try and cut down on fatty food. and don't use paracetamol. I can give you more info but only if you want it.
I had never thought about what pain killers could cause problems. I try not to take them but I had some following the biopsy at the hospital as I was in a lot of pain during the procedure, which I didn’t feel was normal.
Welcome to our friendly forum. We on here, have lots of first hand experience and knowledge, and will give you help and support through this. At least you don't have any of the myriad of symptoms associated with cirrhosis, and if your LFT's are near normal, then that's a good sign.
Please try not to worry too much, it's not a death sentence, and can be managed.
I was diagnosed over 3 years ago with F4 cirrhosis, and I am now compensated, and able to lead a near normal life. I am 72 years old now, which means I have other age related issues, but you are young and fit, so that's on your side.
Just ask away if you need info or support, as there's plenty of that here.
I hope they find the cause of your cirrhosis soon, and then they can instigate a care plan for you.
My superfit, long distance walker hubby was diagnosed with cirrhosis after a massive oesophageal bleed back in April 2012. He is life long t-total and have never shown any signs of any liver disease, however, the cause of his cirrhosis is auto immune. He never showed the typical signs of this disease and although he must have been sustaining liver damage for many years it never showed up enough to be seen by doctors. We are now 8 years down the line and he's still here, not quite living the life he would have hoped because his condition gives him limitations due to side effect conditions of cirrhosis. He was listed for transplant but able to be delisted after 10 months because his condition stabilized. His varices were obliterated by continuous banding regime.
Hopefully your biopsy proves the cause and they can begin treatment to get it under control, it might not take away the cirrhosis but hopefully slow any further damage.
It's not all doom and gloom at this stage, my husbands doctor has patients on his books who have had a diagnosis of cirrhosis for 20+ years and are no nearer needing transplant now than when first diagnosed.
All the best, let us know how you get on with biopsy results.
Thank you for your post. Your husbands sounds like he has been a similar to my symptoms. I’m taking comfort in knowing that things can get better although still life changing.
Did/does your husband still exercise? I have been trying to research if there is anything that I could still do in the future, as I am following the doctors advise and have stopped all exercise. I am worried that I might cause my varices to burst if I increase my heart rate too much. I think this is what I am going to find the hardest things to give up.
Hi Kirsty, he still walks but can't manage the crazy mileage's he used to do. 100 mile + challenge walks etc. Sadly, fatigue and fuelling issues means something like a 10 mile day is exceptional.
He was never told not to exercise even when he was having banding of varices every 5 weeks or so. He ended up having 42 varices banded in all.
Hope you get answers from your biopsy and able to move on.
Welcome to the forum, 🙋I know you are scared, it is the shock of your life to get the diagnosis. The important things to remember are, a) you are not alone and b) you can live with this. I'm in the USA and also have cirrhosis and esophageal varices, thankfully mine have never bled. I am not sure why your doctor told you to to give up exercise, but suspect it has something to do with the weight lifting. Most of us have been told to keep on with mild exercise, perhaps with light hand weights for the arm muscles. But please do whatever your specialist recommends, especially since they are still in the collecting information stage. My grandmother had cirrhosis from a bad blood transfusion and lived to be 85 years old. Mine was probably caused by the same thing, blood l was given had hepatitis C in it. But l am much older than you, that rarely happens now. My heart goes out to you, try not to worry.
Thank you, it’s been really nice reading peoples messages. Learning that it’s not as bad as what you read. I am starting to feel that maybe I have been focusing too much on worse case and not being realistic with my thoughts.
🤞🏻 When I have the diagnosis and start treatment my anxieties will settle.
I believe the doctors don’t want me to raise my heart rate and lift heavy weights to prevent putting more pressure on the varices. They have said I can go for walks but no moderate exercise. But I like to challenge myself in terms of cardio and strength training. I am looking for some other form or exercise, possible yoga or pilate even swimming, could be good but again these do have elements of strength and cardio to them. I guess I am going to have to learn to take it steady for a while.
Hi Kirsty, I got diagnosed at 24 with advanced Cirrhosis, essentially I had toxic levels if iron in my blood, a condition called Hemochromatosis aka ‘The Celtic Curse’ due to it prevalence in Scots/Irish. The good news is you stated you’re symptom free, once your clinicians identify the root cause, hopefully the treatment will reduce the pressure in and around your venous system and possibly allowing you to exercise once more, all the best x
Hi
Welcome to this wonderful forum of kind, caring, compassionate and supportive people. I have compensated cirrhosis diagnosed in February, liver disease originally caused by meds from my drs over the years. You will get lots of good advice on here. Take care and stay safe Lynne
Thank you everyone, I guess it’s all just such a shock and something that I am going to have to adjust to over time. I can already see I am going to have lots of support and advice from everyone on here, and I will take on all your advise and talk, talk and talk some more.
The only good thing about the COVID-19 is that I have my children at home and my husband around to take my mind off things, and spend some quality time with. Also non of my appointments have been cancelled so I am still on for tomorrow, which was another worry of mine!
I have a feeling that it will be an autoimmune disease or a thrombosis in the portal vein but at the moment it is just guess work, hopefully I will get my results tomorrow and know what my treatment will be. I will keep you all posted
What makes you think it is a thrombosis in the portal vein, please? To see that you probably will need an Ultrasound Scan and if that doesn’t see it, like it didn’t mine, then a CT scan or MRI scan. When my Portal Vein Thrombosis was found I’m sure it pushed my need for a Liver TP Assessment referral on very urgently. But we are all different as you no doubt will get frequently told! And my experience with a PVT may well be completely different from yours - 🤞🤞.
I had the Doppler Scan just before the Biopsy. The doctor said I was very difficult scan, so I am guessing if nothing comes back from the test I had next week an MRI is the next point of call.
I have been under investigation for having splenomegaly which was picked up on a scan I had in October, which they have tested for all HIV, Hepatitis and CMV, EBV, Vasculitis Screening and this is why I know my LFT have not been too abnormal otherwise the haematology consultant would have picked up on this sooner, and also left them wondering why my spleen was so big and to what was causing it.
Which makes me think could it be my portal vein blockage because this is connected to both spleen and liver or could be an autoimmune and my spleen has been working overload because of my liver. But like I said it is only guess work at the moment until I get my results. 🤞🏻
Kirsty l had splenomegaly for ages, it is common in cirrhosis because the spleen is picking up for the liver's impaired function. I sincerely hope you don't have a portal vein thrombosis! Please let us know if you have any questions about this or any other subject, but remember your consultant knows your case best.
Wow thanks Kirsty so you have been through quite a “lot” already. I do hope you can get a “better” scan than an Ultrasound given your situation. That will show whether or not there is a PVT I’m sure.
Hope you get a clearer view of your situation soon! The waiting is the terrible part - or one of the terrible parts (!) - of the illness.
I really feel for you. I have cirrhosis and varices too. Now on beta blockers and diuretics as well as a myriad of supplements. Please don't panic, you can take gentle exercise, walks in the sunshine just nothing strenuous that puts your blood pressure up. I am now improving with a good diet, no alcohol, walking every day and a bit of an afternoon nap every day also. I am planning to be around to see my grandchildren
Hi Fam what you can do in the mean time before proper diagnosis is stop alcohol, cut out fat and high carb food. If you haven’t got hepatitis, get the vaccines. Take action and see what improvements may happen. Stay positive and stay chatting on here.
I too was diagnosed with none alcoholic fatty liver disease causing cirrhosis and stage 2 varices ,along with type 2 diadetes the week before Christmas .
I completely understand how you feel ,
I have gone from zero pills a day to multiple pills for this and that.
I have found great support from this group , though I read posts daily I don’t often reply .
Try to rationalise your anxiety , now you have a diagnosis you will be monitored and supported by your GP.
My best advice is not to Google , stay as well and active as tou can and protect yourself from this lethal virus.
I’m in a quandary , I’m a nurse practitioner in a GP surgery, speaking / seeing patients .I don’t think I fall into the at risk group for self isolation but I’m still worried .
No real answers , but you are assured support here
Thanks you, I will also be going from zero pills and have already started with beta blockers I know I will have more medication to come. I suppose people are very fortunate to live a life without any sort of medication or ailment.
I was only saying the same to my husband, I feel like I am planning my own death. We must all go through the same motion whatever our problems, I guess it’s ‘kind of’ normal to do things like that. Xx
I know a few asked me to keep you updated on my results. I attended my appointment yesterday at the hospital.
Unfortunately I did not get any further forward. I was hoping for as the results from the biopsy, but they did not have them available, despite the doctor chasing them most of the morning. He has send a referral for a CT scan with contrast, due to no gain from the Doppler scan I had the week prior. And another appointment has been made for 2 weeks time.
I spoke about potentially banding the varices but they do not want to do that until they know my diagnosis as the treatment for these would differ.
I am starting to feel that the journey I am on is going to be much longer than I thought, and I am very conscious of time, because everything around seems to slowly coming to a standstill with the pandemic. I am hoping to have my CT scan within the next 2 weeks all going well.
I know they are all working so hard and do what they can in such a worrying state of affair the world is in at the moment.
Hiya lovely. Try to stay calm. It's great you have your babies and hubby at home. Try a new thing. I played basketball last night with my 2nd favourite son and my least favourite husband. We had such a laugh!
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